Transition to Adult Care


Hey guys! I have officially been at Auburn University for a month, and man has it been a busy one (War eagle!). College is fun, exciting, and scary all at one time. You are meeting so many new people, while trying to figure out who you are and where you fit in. You are trying to balance your social life and make good grades at the same time. All of this is what a normal college student is going through. In my situation, I also have to balance my health on top of all this. While I’m still trying to figure out what this all means, I have a basic feel for what that entails. It is both strange and difficult to be solely responsible for your own healthcare.

I have always been more involved with my healthcare than your average teen. However, I have also always had my mom there to help me out. In my month and a half of being at college, I have gotten my infusion at the local adult hospital here.

Since I was diagnosed when I was 11, I have always gone to the same pediatric hospital and seen the same doctors and nurses who know everything there is to know about my health. Moving to a new state and having to go see a new rheumatologist where I don’t have the close relationship I had with my old one is tough. On top of that, I transitioned to adult care because now I am a legal adult as of August 24th. It also meant that I needed to go to my first adult doctor by myself, to meet my new rheumatologist on the day after my 18th birthday. The majority of pediatric doctors are very nurturing and are extra compassionate, as you have to be with kids. Adult doctors seem to be much more rigid.

However, there are pros and cons to pediatrics and adult medicine. The adult doctor that I have seen here is clearly much more used to involving his patients directly, rather than their parents or caregiver. He talked to me like I had something to say, and more like I was his equal. This could’ve been because I was very confident in telling him what I needed and what normally goes on with me during my infusions, but he seemed very understanding. He had to learn my entire very complex protocol for my IVIG. He had to learn everything about my long health history in just about an hour. After that appointment, which went very well, actually much better than I had expected, I was admitted to the hospital for my infusion. This also went very well, and I had no major drama which was fantastic. I was quite surprised because I had expected the nurses to be different somehow, but all of them were awesome and very nice.

Being in a new place for my infusion was a strange experience. One of the few complaints I had involved the food. My old pediatric hospital has a room service system. You call down and order exactly what you want and when you want it, and they bring it up to you in less than 45 mins. I guess I was somewhat pampered because of this :). This adult hospital had a schedule. They bring you breakfast at 7:30 whether you are awake and hungry or not, and they give you no choice on what they bring. You don’t like soggy mush in a bowl? Oh, too bad, that’s the only option. It’s the same thing with lunch and dinner. So, because I am a very selective eater due to my ulcerative colitis, I didn’t eat a single thing they served while I was there. I can’t have a lot of things because they upset my stomach, and I am not very willing to try new kinds of food in case they make me feel badly. I did ask my mom to get cereal the second morning when the downstairs cafeteria was open (which isn’t for very long and that was also strange to have such limited hours for the cafeteria).

I did have a couple of other concerns involving having two doctors with different ideas, a hospitalist and my rheumatologist, and I did have a strange experience about my potassium levels. However, that’s a whole other post.

The more that I am in hospitals, I realize that a lot of ideas sound better in words than in actual actions. I am guessing that they are created to bring up scores that are measured and displayed like this.


This new hospital has a policy of giving every patient that is discharged a paper red folder with your medications, diagnoses and allergies. They require you to walk out the door with the red folder, no matter what the circumstances are. I have been going to get these same medications by infusion for 6 and a half years, and I am very confident that I know everything there is to know about what meds I’m on and my diagnosis. I do not need a red folder to inform me about this, especially because I am the one who informed the hospital about my medication list in the first place. When you are admitted, they ask you what medications you are on, and I provided them with this information. I definitely don’t need a physical folder to tell me about this.

I could tell the makers of the red folder more about how to handle my personal health than they could. I personally find it extremely pointless and ridiculous to make every single person walk out the door with a physical copy of a folder. We live in a technology based world. Every single person, with very few outliers, has a smart phone or a computer. We have access to technology, where information is very easily accessible. Why are we not providing people with their health information online in a format that they will always have with them? And I don’t mean through the patient portal because, lets be honest, those are the most worthless pieces of technology I have ever used. I mean we should provide the information through an app where they have all of their medical records and information in one place. (Caresync is a great app for this purpose, go check it out). Also, I wasn’t aware of this policy in the hospital, so I threw the folder away because it had no information I didn’t already know. When I left, the nurse sitting outside my room asked me if I had my folder. When I said I threw it away, she made me dig through the trash to pull it out. She made an immunosuppressed patient reach into the garbage and pull out a useless packet of papers. I do think the idea is a good one in thought, but not in action. I understand that some patients have their medications changed each visit and need something to remind them, and that is absolutely necessary. But do it with technology, which is something they will always have with them, rather than waste paper. I think everyone should have access to what they need to do after a hospital admission but not in the format that this hospital has implemented. It should be given in the format that makes sense for the patient. Maybe an 80 year old person wants a red folder, but as an 18 year old college student, I want it on my phone.

However, all in all, this first infusion in a new hospital was a good one, and I was happy with how it went. This is just my first update on transitioning into adult care. I will be writing about my experiences as I go through this new phase in my healthcare. This was just a quick update on how things have been going so far. As I experience new situations in college, I will be writing about those things as well. I already have a lot more posts that I need to write!

Thanks so much for reading. Sorry it’s been so long since my last post college takes up a lot of time! Please leave me comments on stories about transition or ideas on how to make it easier for me and others like me! Also, if you have any suggestions for posts you would like to hear my opinion on leave those in the comments and I’ll try to write about them soon!

Radio Interview with Pat Rullo

Last week, I was interviewed by Pat Rullo for the Those Radio Kids show. Pat and I met at the Cleveland Clinic Patient Experience Summit, and she previously interviewed me for her Speak Up and Stay Alive radio show. She does great work, so I was excited to speak with her again. She is doing a great show to help kids and teens who have chronic health issues. We spoke a little about my journey, things I have found effective, and advice that I would have for other kids and teens with chronic disease. She is also interested in talking to other young people with chronic disease so let me know if you are interested! Otherwise, don’t be shy. Let me know what you think of the interview and share any tips you might have for others as well.

Here is a picture of Pat and I two years ago at the Cleveland Clinic.



Time with Family

I think I feel my best when I get to spend time with my family. I got to spend a nice break with my grandfather, parents, siblings, uncles, aunt, and my dog. We relaxed, laughed, and had a boat parade for the 4th of July. My family is always watching to see if I am feeling ok, and they are always thinking ahead to keep me out of the sun or to make sure we aren’t doing something that would make me feel worse. It is nice to have such a supportive family. When do you feel your best?

I also got to go with my mom to the White House where she won an award for being a Champion of Change for Precision Medicine. It was so great to see her get such an honor, and I am so proud of her! Here is her blog post, and here is a link to the video (she starts at 2:22 in).

Chronic Pain

One of the biggest struggles i have had with Juvenile Myositis is around chronic pain. I have pain daily, and sometimes it really affects my quality of life. I have developed a pretty high tolerance, and I have many tips and tricks that I try to help me get through the day.

One of my biggest frustrations is that I get asked to “describe” my pain in a scale of 1 to 10, and then the “is it stabbing, throbbing, aching, dull, sharp?” question comes. I think doctors and nurses should ask more questions about how the pain is affecting your life instead of these very narrow questions. If you ask how it affects my life, then you will get a much better understanding of the impact.

For example, here are some questions that I shared on a post for that can be found here. It has a lot more details in it. 🙂

    Could you ride your horse with this much pain?
    Could you walk up a flight of stairs?
    Could you walk down the hall?
    Could you sit at a desk and type on a computer for 30 minutes?
    Could you sit at a table and eat a meal with other people?
    Is there any position where you can get comfortable for 5 minutes?
    Could you sit comfortably long enough to watch a 30 minute TV program?
    Do you put off eating a meal or taking medication because the thought of going to get it is too painful?
    Does the pain cause you to miss activities or turn down invitations for social events?
    Could you play a game for 20 minutes?
    If you were exhausted, could you sleep?

Please leave me comments. I love hearing your thoughts as well.

Dignity Health in June



I was honored to speak at the Dignity Health workshop in Longbeach, California in June. I continue to be so very impressed by Dignity Health and their dedication to improving the patient experience. They put every single employee through some training, and they use my video as one of their tools. They also have a leadership summit about patient experience every year, and now they are doing regional workshops like the one I went to in June.

Their whole organization is centered around their vision for patient experience, and I admire that. I am planning to write a blog this week with my thoughts specifically on that. In the meantime, thank you to Dignity Health for having me, and keep up the good work!

Here are some other fun pictures from our trip We had to go to Hollywood and Beverly Hills too!

Me looking at the Hollywood sign (it seems so little in real life!0


My Hollywood dress purchase from the store where Anna works – Polka Dots and Moonbeams


Better shot of the Hollywood sign


The best steak dinner at Musso and Frank’s

My Cure JM BFF Anna


The Beverly Hills sign (had to do it)


Living the Beverly Hill Life


The hotel made me this for graduating!


Best invention EVER! A machine that dispenses yummy cupcakes 24 hours a day. Thanks Andrew for taking us there!


You might recognize this from Pretty Woman. It is the elevator in the hotel where Julia Roberts said, “Well color me happy, there’s a sofa in here for two!”

Christiana Care in January

So, I am a little behind on posting. 🙂 I realized that I never posted this page that Christiana Care put up after my talk there in January. I was honored to talk to the award winners at their Excellence Awards ceremony. It was really inspiring to see so many people coming up with creative ideas to make patient care safer, more efficient, cheaper, and less stressful. It is an impressive organization. Here is a link to their story.

Guest Blog on

I was honored to be invited as a guest blogger on I met Dr. Greene and his wife Cheryl in February this year, and they really are big believers in patients! I love that Dr. Greene spoke so much about shared decision making and really trying to understand the pain that patients report. I will be writing two more blogs for them in the next few weeks.

This blog entry was meant to provide some perspective on what it is like to be a teenager with a chronic disease. I try to be as “normal” as possible, but it is really challenging to try to deal with all of the medical issues while still in high school. I hope that this blog can provide some perspective to those who see patients and can help other patients know that they aren’t the only ones who are struggling.

The blog post can be found here.

Being a Teenager with a Chronic Disease –

I look forward to hearing other perspectives.